Such a long time

It’s been such a long time since I’ve written. Not just here at FEC-THis but anywhere really (except reports for work).

Maybe its because life has been busy and recovering after cancer takes a lot of energy. Maybe it because between living and working there isn’t much energy left for anything else. Or maybe it’s just that dwelling on what’s gone before and fretting over what might lay ahead just isn’t my thing (it really isn’t). I don’t want to remember much about what having cancer did to me though it’s all still too vivid to blank out completely. I guess it takes time.

So here I am almost 5 years on. Still alive, still well – with a few non life-threatening health issues to live with – still working, still being a wife, Mom and daughter and still grateful for all the extra days I’ve had even if the cancer treatment itself was far from idyllic.

Aside from ongoing check-ups I thought I’d put long hospital visits well behind me. But life has a funny way of throwing up issues just when you think it’s approaching what might be called normal. Our latest exploits include spending most the last fortnight in an isolation ward, including a 36 hour stint with no sleep, because my son J contracted meningitis.

Cancer is a really crappy disease and now I know meningitis is really crappy too. Within a few hours J went from being a healthy, active, fit young man to completely bed-ridden, very unwell and mainly unconscious. He didn’t move for almost 48 hours. Fortunately the out of hours GP we saw decided J needed to be admitted to hospital and once admitted, they started IV antibiotics, antivirals and fluids almost immediately. Within about 7 days there was a marked improvement and after about 12 days J was almost his usual self.

Once again we’ve been lucky. Lucky we didn’t ignore the symptoms (earlier the same day we’d been told it might be migraine or sinusitis – he’s never suffered with either), lucky we went to a very seasoned out of hours doctor, lucky we got the treatment needed before any long term damage was caused.

Like cancer, this isn’t an experience I’d want to go through again. Diseases that strike kids and young people seem particularly cruel. As a parent you want to keep your children safe but there are some things you just can’t protect them from. For me, this was one of them and it’s worth knowing that meningitis symptoms don’t always involve a rash.

Lots has happened since the last time I wrote here and most of it has been good / normal / uneventful. But life is unpredictable and I guess there’ll always be a few hiccups along the way. It’s a miracle any of us stay sane!

 

IMG_0354

Leaving hospital… and looking a trillion times better than when we went in ūüôā

 

Research and rationing


Our ability to research pathogens and continually develop drugs or treatments that thwart them is likely to have changed the course of human life on Earth. Without medicines it’s probable our numbers would be severely curtailed through regular outbreaks of communicable diseases. Many of us may never have survived beyond childhood. In the mid 1800’s around 15% of infants died in their first year and many more before the age of five*. Our quest to cure illness and preserve life has, for many years, been founded on our ability to design and conduct well formulated scientific research. 

Roll forward about 180 years and we’re still conducting valuable research, advancing the discovery of new treatments or more effective drugs for the control of human illnesses, even if we remain unable to cure many of the ailments that afflict us. We appeal regularly and insistently to the public at large to help fund gargantuan efforts of scientific and humanitarian endeavour because resources are scarce and without them we might never find a cure.

As a scientist at heart, the importance of research isn’t lost on me. Neither is the dedication of the people who make it their life’s work to find a breakthrough that might just deliver the elusive cure. The process of research is a huge commitment; intense, time consuming and expensive. Resources involved run to millions of dollars yet recent articles suggest anywhere between 95 – 99% of Alzheimer’s and cancer research fails when tested in humans. It’s a high stakes situation for everyone, scientists, funding bodies, those newly diagnosed and those now desperate for new drugs because all else has failed them.

In the U.K. the situation becomes even more desperate when patients are prohibited from accessing new, proven drugs classified too expensive for NICE (the National Institute for Health and Care Excellence) to support. In reality this non-departmental public body ought to be called the National Institute for Health if it’s Cost Efficient because cost plays a major role when evaluating the provision of new, breakthrough drugs. The postcode lottery NICE was supposed to eradicate has been replaced by a national lottery where no-one wins when a new drug is deemed too expensive. At this juncture I’m left wondering whether any of the money I’ve donated to medical research over the last 25 years has achieved anything worthwhile. Continued rationing of life changing or prolonging drugs makes me suspect my small contribution may have been better invested in items to support those undergoing existing treatments. 

Just recently news of significant research grants includes the statement “hope this work could improve survival rates.” We all hold on to this hope but hope alone isn’t enough. Drugs evaluated as clinically effective are rejected by NICE if the price is too high.  Nivolumab is one example, there are many others. So if NICE continues preventing access to new treatments and patients can only receive older, cheaper drugs, what real term improvements can we expect to see?  Have we forgotten Articles 3 and 25 in the Universal Declaration of Human Rights and if so, should we continue donating to clinical research or would our donations be better spent providing respite or hospice care? Once upon a time I’d have argued medical research was money well spent, but as more and more of my friends get caught in the fight between NICE and the Pharmaceuticals my thoughts become increasingly conflicted.  When life is slipping away, it seems better care for the dying is more important.

*In Western societies 

Hopes for the New Year

berries

2016 has come and gone.¬†There were a few¬†health hiccups for me along the way but nothing compared to the amount of grief and suffering in the world at large.¬†¬†Now 2017 is here and already people are committing atrocities,¬†inhumane and yet so tragically¬†human. My hopes for a peaceful new year will just have to lie dormant¬†for¬†another 364 days and see what 2018 brings. Something tells me it’ll be much longer before we all wake up to¬†find our¬†planet free from strife with every vestige of¬†humanity behaving as truly civilised.¬†I live in hope though, as I’m sure many others do.

Since¬†world peace is well beyond my capabilities, my hopes for 2017 are considerably smaller and more intimate.¬† While many people have been enjoying the Christmas break, work, study¬†and revision (a lot of revision) have been the order of the day for our family. So my first hope is that those of us who’ve been working get a break and those of us who’ve been revising pass our upcoming exams and settle in to our placements for the year¬†ahead.

My next hope is that my friends and family stay happy and healthy in 2017.¬† Last year was something of a trial for most of us and in the end we weren’t unhappy to¬†wish it¬†goodbye.¬† None of us is equipped to deal with too much death, despair and difficulty in such¬†a short period of time.¬† I know I’m still a bit worn down by it all so a less eventful year on the bad news front together with positive¬†physical and mental wellbeing for all of you is my wish this year.

The last of my hopes for 2017 is a personal one because this year marks the 5 year anniversary of my cancer diagnosis.  If I sat down to write all the things that have happened since June 2012, the challenges, the bête noir, the unending uncertainty and the sheer weight of it all I fear I might lose touch with my sanity.  So instead it shall stay in the past where it rightly belongs and I shall hold hope that health-wise, 2017 is incredibly, remarkably and boringly uneventful for me.  Because uneventful means the likelihood of a reoccurrence, whilst never fully extinguished, is considerably diminished from June onwards.

Whatever you leave behind from 2016 and whatever you hope for from this new year, may health and happiness be your faithful companions in 2017 too.

A regrettable winter

My mother died twenty years ago this December 2nd. I remember it clearly for several reasons.¬†Her death was unexpected, she’d almost finished chemo following another run-in with cancer. Cruelly, she¬†was in hospital receiving treatment for chemo-related complications and everyone thought she’d be home for Christmas – she wasn’t ready to give up and nor were we but none of us got what we’d hoped for. Fortunately or unfortunately depending on your viewpoint¬†I was there when it happened, and now, 20 years on, the violence of her death still plays vividly in my memory with full technicolor and time stretching slow motion despite my best attempts to erase that fateful winter day.

In the early years following her death seasons of the year blended one to another, life continued but the gap she left behind was all consuming. Christmas, which had always ¬†been one of my favourite times of year, became desolate and hurtful. My memories consisted only of my Mother’s untimely death and the actions that had consumed me in the period leading up to her funeral. I spent many Christmases in the wilderness, caught between bereavement and bewilderment. It is not a time I would choose to relive.

Roll forward twenty years and I’m still here, and still filled with sadness about my Mother’s death. It’s no longer acutely painful because as humans I suppose we’d cease to function if anguish and torment stayed so raw for so long. Today the feeling resembles a blanket of numbness, the kind that comes with Novocain. You know there’s a lot of pain beneath but on the surface it’s no longer perceivable. Somehow ¬†you know it’s a trick, because the numbness is transitory and the pain might resurface when the Novocain wears off. So you hope it never wears off.

For the longest time just thinking about my Mother conjured images of her death and nothing else. It’s taken two decades for other, happier memories to creep back in. ¬†My Mother was never a moaner. Throughout her illness she never asked “why me.” ¬†During her sickest, most challenging days she always had more concern for others than she did for herself. ¬†Generosity of spirit was one of her greatest characteristics and something I learned a great deal from.

Twenty years on my relationship with my Mother’s death has shifted from one of desolate unhappiness at her early departure to one of gratitude and profound joy for the time we spent together. Of course I’d have wanted her to have 80-something years on Earth instead of the 40-something she achieved. I’d have wanted her to enjoy many more happy years with my Father and live to see her grandson grow into a young man with a passion for helping others and a talent for medicine. Winter 1996 snatched all of those things and more away from us. But times change and winter is no longer such a regrettable time of year. I remember happier times, times spent with my Mother making Dundee cake and Brandy snaps, ¬†decorating the Christmas tree and wrapping presents. Her death was cruel and untimely but her loveliness and warmth live on, timeless and unchanging.

Summer 1993, Mum, J & me

Summer 1993, Mum, J & me

 

 

 

Remembrance

 

Maple tree, Clun

“It has been said ‘Time heals all Wounds.’ I don’t¬†agree. The wounds remain.¬†¬†In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.¬† But it is never gone.” Rose Fitzgerald Kennedy.

It’s been a long while since my last post to FEC-THis. Summer has come and gone, Halloween and Guy Fawkes too.¬† My country remains¬†perplexed¬†by the decision of the majority of its people to say goodbye to the EU.¬†The same confusion now looks set to grip the US. The catalyst may¬†be different but the root cause¬†seems¬†similar and all the while, pestilence, war,¬†famine and death¬†continue to spread their wares¬†throughout¬†the globe. Tomorrow is Remembrance Sunday, a day when we remember those who have sacrificed themselves to secure and protect our freedom. Over the years many millions have sacrificed yet our freedom remains fragile and we continue to¬†live in¬†troubled times.

It’s good to remember but sometimes it’s good to forget.¬† Or at least try.

So much has happened since I last wrote here, some of it good, some of it not so good. Pre-cancer levels of health and wellness continue to elude me. Simple things like opening jars or bottle tops are more challenging than they might otherwise have been.  Running, climbing (stairs, steep paths, hills) and dancing are all possible in my head but  unimaginably taxing in reality. Reading, reasoning, analysis and deduction take effort when not so long ago they were entirely effortless.

Life is full of compromises and treating cancer to secure more days on Earth has, at least for me, meant sacrificing many things that came easily before.

Being sad or mad about all of this seems the most natural course of action but those emotions take a lot of energy and no amount of rage or sorrow has ever been able to change the past.  Like the deciduous trees shaking off leaves in readiness for winter, weaving rich carpets of amber, bronze and gold, the last few months have been a time of  reintegration. Time to be in the moment, no past and no future, no wraiths from yesterday or castles in the air of some mythical tomorrow. The trauma that was, the scars that are and whatever might light the way or lurk in darkness along the road ahead, none of it matters. It is what it is, no more and no less.

I began this journey because I needed to save my life, but¬†I wasn’t saving it for me.¬†Putting food on the table and a fire in the hearth for those who depend on me¬†has¬†always¬†been the driver. Four years on, I finally realise my¬†overwhelming sense of duty and responsibility¬†for¬†others is nothing short of¬†a¬†Herculean task –¬†one that my¬†tango¬†with cancer leaves me ill-equipped to complete. So¬†I’ve decided Herculean is not for me, whether that’s capturing¬†the Cretan Bull, bringing back the Mares of Diomedes or simply being the person everyone expects to¬†make everything alright. ¬†In an earlier life this¬†decision would’ve left¬†me riddled with guilt, and plagued with¬†thoughts of failure and defeat. Today it brings a gentle air¬†of comfort, long-awaited tranquility and reprieve.

This weekend I’m remembering all those who sacrificed for my freedom and how¬†very grateful to them I’ll always be. In a small and quiet way¬†I’m also remembering myself.

 

 

 

 

21 scars and all out of love for sloth

Just when I thought it was reasonably safe to put the operating theatre behind me…

2 out of 4 news scars, 21 in total

a bunch of symptoms showed up with plenty to contemplate. Upper right quadrant pain before breakfast, at random points through the day and resistant to over the counter pain-killers. An intermittent feeling of fullness beneath the ribs or a hard area towards the sternum, with pain, sometimes radiating to the right shoulder blade. After a run-in with grade 3 HER2 positive cancer, metastases couldn’t be ignored. The only way to find out was further tests. At the end of last year yet more blood tests and another ultrasound ensued.¬†There are protocols around ultrasound and the sonographer isn’t usually at liberty to say anything but on this occasion he was more forthcoming and said the liver looked normal. I guess he knew no-one wants the thought of liver mets hanging over them like the darkest of dark clouds.

The source of the problem was identified quite quickly and completely non-invasively: a large gall stone.

Fast forward six months and there are four new scars to add to the previous seventeen littered around my torso. Although these are small in comparison to some of the cancer-related scars the after effects of gallbladder removal (laparoscopic cholecystectomy) have been more painful and recovery seems slower. Perhaps it’s because my body was already a human pin cushion and there’s only so many holes that can be made through a single belly button without repercussions?¬†Strangely the scars in the area where the gallbladder used to be don’t hurt and the one in the midline, just below the sternum, is barely noticeable but the belly button and whole lower abdomen is another story. Maybe that’s because it’s been used before for other surgeries or maybe it’s because this surgery involved pumping carbon dioxide into the area leaving my whole abdomen distended like the alien in alien autopsy. Almost a week on and it is still out of shape.

In the recovery room where it took some time to recover (and was a little worrying at first) they showed me the offending gall stone. Just one but of sizeable proportions and certainly enough to have caused all the previous symptoms. The consultant came to visit on the ward and said “it was nasty in there.” I’m still not sure exactly what he meant and didn’t have the heart to tell him it felt pretty nasty living in here post-surgery too. It’s the one time when I’ll gladly declare opiates have been my friend.

Since parting company with the gallbladder and its unwelcome occupant all the unpleasant feelings and malaise thought to originate from there have gone away. Early days but with luck those problems are gone for good. As for the scars, they are healing well. (That purple stuff is medical super glue and it flakes off in 5-10 days.) ¬†¬†One of the worst things about surgery is recovery. It can’t be rushed which means being careful, nothing strenuous and giving things time. But time is precious and aside from piling on pounds when I sit around, every day spent in inactivity feels like an opportunity missed. It’s frustrating. Twenty-one scars in a 30 x 50 cm area is more than enough so hopefully this surgery is the last. Precious days are passing and I’m all out of love for sloth.

A slog more than fight

Until my mid-teens ‘fight’ meant one of three things:

  1. Squabbles between siblings – verbal, physical, but more often than not both.
  2. Altercations between kids at school, rival gangs, or the heavily inebriated having the kind of night they’d completely forget by morning.
  3. Boxing – where men knocked the stuffing out of each other for money in the name of sport. Female boxers were strongly discouraged at the time.

Since then ‘fight’ has taken on some extra meanings:

4. The role the armed forces conduct and lay down their lives for when politicians, fanatics, dictators or megalomaniacs fail to address their differences peacefully and revert to Neanderthal tactics. Clubbing one’s rivals is a proven solution tried and tested over many millennia.

5. The thing people with life-threatening or terminal illnesses are supposed to do, especially people diagnosed with cancer.

As a simple soul I’m ill equipped to explain why a proportion of humanity continue to pursue theological, political and ideological power-games that lead to more serious and deadly forms of the altercations witnessed in my childhood and teens. It must be something only despots truly understand.

I know a little more about the expectation to fight cancer than I’d ideally like and unfortunately its the kind of knowledge that once incorporated is impossible to forget.¬†The language of cancer is frequently the language of war. People fight cancer, battle with cancer or wage a war on cancer because they are fighters, warriors, or even assassins. On some occasions ¬†people win their cancer fight, but rarely is that completely guaranteed. On other occasions we’re told they battled bravely and courageously but sadly passed away. In real terms cancer is a win:lose scenario but whatever the situation, the language of cancer is full to the brim with fighting talk.

Perhaps societally we find it easier to deal with cancer if we say it’s something people fight. Fights can be won so when someone fights cancer there’s a chance they might win. This in turn can help make it a less frightening prospect for everyone else. School sports events conditioned us from an early age to know the winning team is always where it’s at so we rarely hear talk of people giving up, refusing the fight or waving the white flag of surrender. Giving up just isn’t the done thing, we must stay strong and keep fighting. There’s no glory in coming second, we have to win! ¬†When people die (and lots of us will die from cancer) we hear talk of remaining courageous to the end. Perhaps this too is a means to make the truth easier to bear because someone else just lost their life to a disease we barely understand and still cannot prevent or cure.

I don’t like violence and never fully understood how anyone could fight with themselves so the language of cancer has never proven particularly helpful for me. Like it or not cancer is a bunch of our own cells that proliferate forever – cells that somehow manage to step outside the normal circle of life. Cancer¬†is me, albeit an aberrant version. We are all different and for some people fighting analogies might be hugely helpful. For me the whole cancer thing is more of a slog.

Slog:

  1. to work hard over a long period especially doing work that is difficult or boring.
  2. to travel or move with difficulty, for example through wet, sticky soil or snow, or when you are very tired.

Dealing with cancer has taken considerable effort from me and my medical team. From diagnosis to current day I’ve been fortunate to receive nine separate surgical procedures designed to eradicate cancer, deal with the unwanted after effects of previous surgeries and do as much as possible to prevent any return of a disease with a high propensity to spring up elsewhere. In parallel chemo and monoclonal antibody therapies took place over a period of 10 months, again with the aim of preventing reoccurrence so that I might go on living my life in the quiet, peaceful way I’ve come to enjoy.

My cancer journey to date has taken four years, almost 15% of my adult life. In real terms this is very little – for some people including my own mother, aunt and grandmother it took much more.¬†¬†I will always be grateful for every extra second gained through the expertise and determination of my medical team because without them my chances were slim to non-existent. Together we have now done everything possible to help me remain cancer free. Only time will tell if it’s been enough.

I haven’t¬†been fighting for four years, I haven’t been brave or courageous and I don’t feel like a warrior. I faced a situation with few options, underwent gruelling treatment with unintended consequences and continue to rebuild my life, including everyday things like walking and working memory. I’ve been unrelenting for four years, enduring and tenacious, and I often feel tired and decrepit. I keep pushing myself hard because I want to do the things I could pre-cancer. Sitting here waiting or wishing for their return isn’t going to work.

In the time it’s taken to walk this cancer journey so far I could have walked around the Earth twice. Don’t get me wrong, I am glad to be here and largely in one piece but that’s not enough because I’m not old enough to be decrepit. When I can once again walk more than a few hundred yards without days of painful repercussions, when I can go up stairs without grasping the handrail for fear my knees will give way and when I can read a book when tired and not have to re-read it next day I’ll be completely overjoyed.

For me this cancer journey continues even though the cancer itself appears to be gone. It’s much more a slog than a fight.

Credit: CRUK

 

 

The daily prompt – Fight.